Re: a sobering but important question

[Guest guest]

On Sat, Oct 23, 2010 at 7:26 AM, Beth Freishtat <beth@...>wrote:

>

>

> I have a 4 and 5 year old who have had Lyme and co-infections for the

> past 2.5 years. They started antibiotics around 4 months after being

> infected and are still on loads of medication. I'm writing because I

> need some help creating two different lists:

> 1) A list of possible future problems either child may have (as it is

> my son lost all of his speech when he got infected at age two and has

> been in speech therapy 5x/wk -- we are playing the waiting game to see

> about other developmental delays). The list should include problems

> that are small, like diarrhea or big like kidney damage or severe

> allergic reactions to a drug or developmental delays. As sobering as

> this will be to read, it is important. it is hard to say what you should

> expect as every case of lyme and how it affects one's body is different. for

> example my neurologist dismissed lyme because i did not have the classic

> joint pain or swelling. there is not even small issues we could address. one

> child might have extreme neurological symptoms and another might not have

> any but have extreme fatigue and joint pain.if there is a drug reaction it

> could require an ER visit so you need to know your copay, and they will

> switch to a different med. kidney damage and developmental delays vary, so

> it is hard to say, there is no hard line/rule here. unfortunately with lyme

> it forces you to take one thing at a time and how it comes.

> 2) The second list is of possible future expenses. Everything from

> obvious ones like lab work, doc appts, speech therapy etc., to more

> obscure ones like the cost of eating gluten free, possible tutoring,

> possible long-term problems that lead to spending money, etc. this is also

> an area that depends on your insurance situation and what doctor you are

> seeing. my llmd charged me $200 for the initial visit but i have heard

> others being charged $500 up with different dr.'s. my insurance has paid for

> all my meds for 2 yrs. with no problem however, i have seen other people

> post with the same carrier and write that they are being denied.

> unfortunately, your experience with these two issues will be your own. just

> to address the specifics, gluten: it depends on how on board you get, yes a

> gluten free pancake mix is more expensive than one that is not. if you

> homeschool you could co-op with other families for tutoring or hire a

> teenager, although it seems with as young as they are you should have no

> problem teaching/helping them. even tho your son is in speech therapy he

> could still learn abc's, 1,2, 3's etc. with repetition, you reading to them,

> songs on tape, story time at the library.

>

>

> If you all could simply tell me what you have been dealing with (or

> resources where I might find this information) and costs I may not be

> expecting, I would really appreciate it.my 9yr. old son has not officially

> been diagnosed with lyme as i have but i suspect it and he is thankfully

> very functional compared to most kids. so with him i am doing herbs like

> smilax, and teasel. for symptomatic relief i am doing homeopathic remedies.

> but he is a special case as he is not daily affected by lyme in a

> debilitating way and has not had a confirmed dx. he did test positive with

> ehrlichia and " suspicous " for lyme so we are doing immune support and herbs

> for now. no sugar!!! no dairy, i make smoothies with frozen fruit, organic

> apple juice and coconut oil. we don't do the no gluten but are heading in

> that direction. you might want to check out the lyme diet book. lots of

> whole foods and no fast food. best wishes.

>

>

> Thank you so much for you help!

> Beth

> beth@... <beth%40nativseminars.com>

>

>

[Guest guest]

Unfortunately, there's no way to know what symptoms your kids will

have or damage they may be left with. With Lymes it all depends on

what the spirochetes decide to do in the body and how early and

completely you treat it. Everyone's case is usually different. Some

have similar symptoms and some people have completely different

symptoms. Your two kids probly have different symptoms and they more

than likely have the same kind of Lymes. The spirochetes can differ

depending on what kind of tick you got it from and what part of the

country and how you contracted it. From a bite or congenital. Do

they have other co-infections? I know it's a powerless feeling. But

you are treating them now and that's good. Hopefully they get better

and have very few herxheimers.

Although there are a few things that are customary like they need to

take Probiotics for their stomach and gut. Your doctor can help you

with what kind. Nutrition is very important. Expect the school to

give you problems.

The expense varies too. Insurance covers some of it if you have good

insurance. In my opinion I would do everything I could not to tell

the insurance company they have Lymes. I would just tell them your

treating the symptoms and they won't question covering the bill.

Sometimes they " won't cover " things like " Lymes " It puts you in a

high risk category and will keep them from getting insurance in the

future. Good luck.

Suzanne

On Oct 23, 2010, at 9:26 AM, Beth Freishtat wrote:

> I have a 4 and 5 year old who have had Lyme and co-infections for the

> past 2.5 years. They started antibiotics around 4 months after being

> infected and are still on loads of medication. I'm writing because I

> need some help creating two different lists:

> 1) A list of possible future problems either child may have (as it is

> my son lost all of his speech when he got infected at age two and has

> been in speech therapy 5x/wk -- we are playing the waiting game to see

> about other developmental delays). The list should include problems

> that are small, like diarrhea or big like kidney damage or severe

> allergic reactions to a drug or developmental delays. As sobering as

> this will be to read, it is important.

> 2) The second list is of possible future expenses. Everything from

> obvious ones like lab work, doc appts, speech therapy etc., to more

> obscure ones like the cost of eating gluten free, possible tutoring,

> possible long-term problems that lead to spending money, etc.

>

> If you all could simply tell me what you have been dealing with (or

> resources where I might find this information) and costs I may not be

> expecting, I would really appreciate it.

>

> Thank you so much for you help!

> Beth

> beth@...

>

>

[Guest guest]

I just want to add though, that our LLMd, Dr. H in California, has repeatedly

told us that kids bounce back exceptionally well if they are treated before

puberty -- they do bounce back but not always as completely after that.

Natasha

________________________________

From: Suzanne <suzlwilliams@...>

Sent: Sat, October 23, 2010 2:38:27 PM

Subject: Re: [ ] a sobering but important question

Unfortunately, there's no way to know what symptoms your kids will

have or damage they may be left with. With Lymes it all depends on

what the spirochetes decide to do in the body and how early and

completely you treat it. Everyone's case is usually different. Some

have similar symptoms and some people have completely different

symptoms. Your two kids probly have different symptoms and they more

than likely have the same kind of Lymes. The spirochetes can differ

depending on what kind of tick you got it from and what part of the

country and how you contracted it. From a bite or congenital. Do

they have other co-infections? I know it's a powerless feeling. But

you are treating them now and that's good. Hopefully they get better

and have very few herxheimers.

Although there are a few things that are customary like they need to

take Probiotics for their stomach and gut. Your doctor can help you

with what kind. Nutrition is very important. Expect the school to

give you problems.

The expense varies too. Insurance covers some of it if you have good

insurance. In my opinion I would do everything I could not to tell

the insurance company they have Lymes. I would just tell them your

treating the symptoms and they won't question covering the bill.

Sometimes they " won't cover " things like " Lymes " It puts you in a

high risk category and will keep them from getting insurance in the

future. Good luck.

Suzanne

On Oct 23, 2010, at 9:26 AM, Beth Freishtat wrote:

> I have a 4 and 5 year old who have had Lyme and co-infections for the

> past 2.5 years. They started antibiotics around 4 months after being

> infected and are still on loads of medication. I'm writing because I

> need some help creating two different lists:

> 1) A list of possible future problems either child may have (as it is

> my son lost all of his speech when he got infected at age two and has

> been in speech therapy 5x/wk -- we are playing the waiting game to see

> about other developmental delays). The list should include problems

> that are small, like diarrhea or big like kidney damage or severe

> allergic reactions to a drug or developmental delays. As sobering as

> this will be to read, it is important.

> 2) The second list is of possible future expenses. Everything from

> obvious ones like lab work, doc appts, speech therapy etc., to more

> obscure ones like the cost of eating gluten free, possible tutoring,

> possible long-term problems that lead to spending money, etc.

>

> If you all could simply tell me what you have been dealing with (or

> resources where I might find this information) and costs I may not be

> expecting, I would really appreciate it.

>

> Thank you so much for you help!

> Beth

> beth@...

>

>

[Guest guest]

I only have experience with my girls being not treated - 7- 11 - &

15.........but after treatment things will not continue to get worse.....trying

to map out your life with lyme is unattainable..........at least how I see

it.......treat your kids NOW so that things do not get worse......my girls

contacted this congenitally and they are each different-- but looking into the

future now that they are in treatment gives me a sense of some

relief.........and I know in my gut within the next five years big things are in

store for people that suffer with this disease...........I do not know what but

maybe a cure or at least better treatment.........we live today and make today a

better place for our children with what we have......tomorrow is tomorrow and

can only worry about that then..........yes, being prepared is a great

thing.....but we are talking about a disease that we can not prepare

for........it's expensive and hard but it's well worth it in the

end............you are doing a great job taking care of these kids........do not

worry about things you can not control right now.......you have enough to

do.......Bless you and I hope you find peace........  Diane

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Sat, October 23, 2010 5:16:56 PM

Subject: Re: [ ] a sobering but important question

 

I just want to add though, that our LLMd, Dr. H in California, has repeatedly

told us that kids bounce back exceptionally well if they are treated before

puberty -- they do bounce back but not always as completely after that.

Natasha

________________________________

From: Suzanne <suzlwilliams@...>

Sent: Sat, October 23, 2010 2:38:27 PM

Subject: Re: [ ] a sobering but important question

Unfortunately, there's no way to know what symptoms your kids will

have or damage they may be left with. With Lymes it all depends on

what the spirochetes decide to do in the body and how early and

completely you treat it. Everyone's case is usually different. Some

have similar symptoms and some people have completely different

symptoms. Your two kids probly have different symptoms and they more

than likely have the same kind of Lymes. The spirochetes can differ

depending on what kind of tick you got it from and what part of the

country and how you contracted it. From a bite or congenital. Do

they have other co-infections? I know it's a powerless feeling. But

you are treating them now and that's good. Hopefully they get better

and have very few herxheimers.

Although there are a few things that are customary like they need to

take Probiotics for their stomach and gut. Your doctor can help you

with what kind. Nutrition is very important. Expect the school to

give you problems.

The expense varies too. Insurance covers some of it if you have good

insurance. In my opinion I would do everything I could not to tell

the insurance company they have Lymes. I would just tell them your

treating the symptoms and they won't question covering the bill.

Sometimes they " won't cover " things like " Lymes " It puts you in a

high risk category and will keep them from getting insurance in the

future. Good luck.

Suzanne

On Oct 23, 2010, at 9:26 AM, Beth Freishtat wrote:

> I have a 4 and 5 year old who have had Lyme and co-infections for the

> past 2.5 years. They started antibiotics around 4 months after being

> infected and are still on loads of medication. I'm writing because I

> need some help creating two different lists:

> 1) A list of possible future problems either child may have (as it is

> my son lost all of his speech when he got infected at age two and has

> been in speech therapy 5x/wk -- we are playing the waiting game to see

> about other developmental delays). The list should include problems

> that are small, like diarrhea or big like kidney damage or severe

> allergic reactions to a drug or developmental delays. As sobering as

> this will be to read, it is important.

> 2) The second list is of possible future expenses. Everything from

> obvious ones like lab work, doc appts, speech therapy etc., to more

> obscure ones like the cost of eating gluten free, possible tutoring,

> possible long-term problems that lead to spending money, etc.

>

> If you all could simply tell me what you have been dealing with (or

> resources where I might find this information) and costs I may not be

> expecting, I would really appreciate it.

>

> Thank you so much for you help!

> Beth

> beth@...

>

>